Planning for your special-needs child's future must start early

Just two weeks down the calendar loomed the day Carol Patinkin had dreaded since her little boy was a toddler.

Avi was born with Williams Syndrome, a rare genetic disorder that delays growth before and after birth. Within days, they would celebrate his 22nd birthday.

For most young adults, turning 21 marks the threshold of maturity. For those with special needs, 22 is the door to adulthood.

"For kids with special needs, 22 is a very significant birthday-and not in a positive way," says Patinkin, 50, of Wilmette.

"The day before is the last day they are entitled to services through the school system," she says. "The next day you're done."

As parents of children with disabilities struggle through the draining days of doctor's appointments, advocating with the school district and managing taxing behavior from breakfast to bedtime, the giant question marks hover over the household like a silent fog shrouding the future.

What will happen when he grows up? What will she do when I'm too old to take care of her? Will his brothers and sisters take care of him? How will she ever learn to live and work and love and play as a grown-up?

"You're never done as parent of a special needs child. There's always uncertainty," says Jim Zils, father of a 33-year-old son with microcephaly.

"The questions are just woven into the fabric of our lives."

Start early

The Zils and other Chicago area parents have found answers to those confounding questions. The most important thing, they all agree, is to start looking for them early.

Really early.

Jon Zils was on a waiting list for Lambs Farm, an adult work and living program in Libertyville, when he was 12. A year ago, when he was 32, Jon's name made its way to the top of the list and he moved in.

"We knew it was going to happen someday. We just didn't know what day that was going to be," says Jon's father, Jim.

Lambs Farm is among an array of Chicago area living and working options for adults with disabilities. Lambs Farm is a non-profit organization that grew from a small pet shop in Chicago in the early '60s to a 72-acre campus with a restaurant and gift shop where more than 250 men and women live and work.

Jon works on a maintenance crew mowing grass and setting up for events at the farm. He also works at the local Jewel-Osco, where's he's been a bagger for 12 years. He goes to dinner and dances with friends, plays bocce ball in Special Olympics and takes classes in life skills.

Jon pays his own way at Lambs Farm through his income and his Social Security Disability Insurance benefits.

Jim Zils says it's the best-case scenario for his son.

"We are lucky. But it isn't all luck," Zils says. "We worked hard at it."

Zils saw his as a three-fold mission. He wanted to see Jon shape a life with a work component, a social life and a safe, stable place to live. Since the living piece was going to take awhile, they focused on the other two.

Jon became a part of social groups through the Special Recreation Association of Lake County and went to life skills programs that helped him learn how to shop, cook and handle money.

Meantime options

There are lots of programs out there to help young people move from school to work. We Grow Dreams Greenhouse& Garden Center in West Chicago, for example, offers jobs to people as young as 14 in growing plants, making crafts and working in the garden and gift shop. There is no waiting list for We Grow Dreams. There is a $150 per month tuition fee, but workers earn about half that back in wages.

"The goal is not for people to grow up and get a job in a nursery," says Laurie Staple, team program manager. "It's to foster good social skills and work skills and transition into other jobs in the community."

The Parents Alliance Employment Project (PAEP), with offices in Lombard and Lisle, was launched in the 1980s by parents looking for work opportunities for their youngsters with special needs. Many of its clients work in clerical jobs. Others work in jobs ranging from restaurants and retail, hospitality, warehouse, health care, janitorial, electronics, entertainment and education.

PAEP is funded by the state Division of Rehabilitative Services and is free to the families who use it.

Hiring people with disabilities makes good business sense, says Becky White, business development coordinator at PAEP.

"They tend to stay in jobs longer, they are very hard working, they don't call in sick a lot," she says. "It tends to rub off on other employees."

The Will-Grundy Center for Independent Living pairs staff members with disabilities to help others learn job, social and life skills transition services.

"Since most of our staff has disabilities, the young people learn from adults with disabilities who have succeeded," says Executive Director Pam Havens.

Finding focus

For Carol Patinkin and Avi, switching focus from academics to work and life skills isn't easy. In high school, Avi had an uncanny memory for history, geography and world events. He is a gifted singer who routinely performs for an audience of thousands.

"He can rock a room like nobody's business," Patinkin says.

There's a part of her that wishes her son, like those of her friends, was going to college instead of into other career training.

"When it comes to giving up the academic focus, most parents go kicking and screaming" she says.

Avi is in an adult program with Keshet in Northbrook, where he helps deliver Meals on Wheels and takes life skills and music classes. They are working through the red tape to eventually get funding for him to get in a residential program like the Keshet-sponsored Migdal Oaz house in West Rogers Park. Migdal Oaz has rooms for six men and there are 75 on its waiting list.

Abbie Weisberg, executive director at Keshet, isn't very proud of her state's track record when it comes to funding programs for adults with disabilities. Illinois ranks 51st when it comes to providing funding for adults to live in community-integrated houses of up to six, she says. Community homes cost no more than a more institutional setting.

Red tape trimming

To help them through the metamorphosis from youth to adulthood, the Patinkins are working with Sherri Schneider of Family Benefits Solutions in Buffalo Grove. Schneider, the mother of a son with special needs, for more than 30 years has worked with about 660 families to help them get benefits they need, such as Social Security Disability Insurance, Medicare and Medicaid and others.

She boasts she knows 32 ways to get a hospital bill paid. What doesn't work for some may work for others.

"Our kids do not come with manuals," she says. "I help with the things that keep parents up at night. What will happen to them when I pass away? How can I keep as much of our money as we can for the things we really need to pay for?"

Patinkin took hope when she heard about the Zils' happy story. It turns out, the two families learned they have something in common besides a son with special needs. The Zils worked with Schneider, too.

A timeline for families with special needs

• If, at birth, your infant remains in the hospital for some time, apply for Supplemental Security Income. As long as the child remains in the hospital, parents' income and assets will not count. To apply, call (800) 772-1213. If your child has no or limited health insurance, think about applying for Illinois Medicaid.

•Work on special needs estate planning including wills, special needs trust, powers of attorney and change of beneficiary.

•From birth to age 3, have your child evaluated for early intervention programs. To locate the agency for your area, call (217) 782-1981.

• Do not open any assets in your child's name. Let others know this as well.

• At age 3, seek as much help from the school district as possible. You may need to hire a school advocate or attorney to get what your child needs.

• If your child has the diagnosis of developmental disability or on the autism spectrum, you must do a PUNS (Prioritization of Urgency of Need for Services), Illinois' waiting list for services. Call your Independent Service Coordination Agency (ISC) at (800) 588-7002 or (888) DDPLANS. You can request funding respite, children's waiver, Home Base Service waiver, job coaches and group homes.

• To find programs that do not consider parents' income and assets, call Case Management under Division of Specialized Care for Children (773) 444-0043.

•Attend as many conferences as you can to obtain information for your child's future. The schools have presentations and The ARC of Illinois lists many on its Web site. Find support from fellow parents at www.iacdd.org.

• At 18 years old: Apply for SSI, apply for Medicaid, consider the need for guardianship vs. powers of attorney, get a school power of attorney executed and given to the school, get an Illinois Identification Card, look into the RTA's Reduced Fare Permit and ADA Paratransit Service, register them to vote if applicable and resister males for the Selective Service.

•In Illinois, special education can end the day before your child turns 22. One year before this, do your due diligence to look at day and residential programs.

•Prepare and update a "Letter of Intent" about your child: likes, dislikes, current doctors, doctors to never see again, daily routines, what frustrates them, how to handle a "melt-down." Google "Letter of Intent" to see many different versions.

Source: Sherri Schneider, Family Benefits Solutions

Robyn Monaghan is a long-time journalist and mom living in Plainfield.